What do donors need to know about future research?

I’m reading a Scientific American Guest Blog, on the ethics of future-use DNA sampling. Donating DNA to research is described as a more lasting donation than donating organs or embryos: DNA is information and information can last longer.

That donating DNA is such a lasting donation seems to imply that the future use to which the DNA can be put to use is more open. Who knows what information future researchers might be able to obtain from DNA donated today?

The author of the guest blog, Ricki Lewis, asks how consent can be obtained for DNA sampling intended for future genetic research.

She rejects the view that researchers must know in advance where the research might lead and inform donors about it; and if research takes unforeseen directions years or decades after the donation, researchers must contact donors again for renewed consent.

This view is rejected because knowing where research might lead “is not how science works.” And renewed consent would be “confusing, disturbing, and likely expensive.” – I agree.

Ricki Lewis’s own solution is the following:

“…informed consent documents should state that the sample might be used in the future to get information unknown today. Participants or patients can agree, or not sign.”

Both solutions seem to operate on a level that strikes me as less relevant to DNA donors.

People who donate DNA to science probably want to contribute to research that can improve prevention, diagnosis and treatment of various diseases. That is the level at which they are concerned about the future use of their DNA: the level of the practical significance of the research.

The exact scientific path that future research takes is less relevant to donors, I believe, as long as the research has the kind of practical significance that motivates their donation. And to ask for consent to do science as science is done – without knowing in advance where it might lead – could be confusing.

I also wonder: could a consent form that emphasizes the open and unpredictable nature of scientific research be misused on the practical level that probably concern donors more?